Consumer Participation in Drug Treatment Services:

Overview of Australian Research

Carla Treloar

Acknowledgements

Based on research done in partnership with AIVL and NUAA1. Extent to which consumer participation takes place in drug treatment

services; and how much consumers know about the existing opportunities for involvement

2. Service consumers’ and providers’ (1) beliefs about, and levels of commitment to consumer participation; and (2) perceived barriers to conducting or participating in consumer participation.

3. Evaluation of demonstration projects in 3 states, 5 services – AIVL• Organisation issues impacting projects

4. Evaluation of demonstration projects in NSW, 3 services – NUAA• Staff-client relationships

Background

• ‘the process of involving health consumers in decision making about health service planning, policy development, setting priorities and quality issues in the delivery of health services’

• Commonwealth Department of Health and Aged Care, 1998

• varying degrees – ranging from the sharing of information and opinions about

services to – engaging in shared problem solving and joint decision-making

Ladder of consumer participation

Degree Type of activity ExampleHigh CP built into values and

policiesCP incorporated into mission; consumer rights charter

Consumers share in decision making

CR in planning committees, staff meetings, staff appraisal & recruitment

Mid Non-decision making roles Consumers involved in staff training; development of resources

Low Promote and support consumer involvement

Consumers supported to conduct their own groups

Information exchange Consumer councils/forums, surveys, suggestion box, complaints

Survey of services

• 3 states – NSW, Vict, WA

• Random sample

• 3 types of services– Pharmacotherapy– Resi rehab– Resi detox

• Response– 64/78 service providers– 179 consumers

What services do:

Degree Type of activity ExampleHigh Decision making committees 20%

Provided with charter of rights

85%

Mid Facilitate own groups 50%

Low Survey of consumers 64%

What consumers know:

Degree Type of activity ExampleHigh Decision making committees

Charter of rights0% (of 28 consumers)70%

Mid

Low Complaints process;Suggestion boxes; Surveys

54%44%37%

Implications

• At the time – no policy direction or funding re CP– Encouraging extent of activities– Small minority included consumers in decision making activities

• Critical that consumers are aware of CP activities– Very concerning that half knew of complaints redress processes

• Residential services somewhat better at making consumers aware of CP than pharmacotherapy

• Charter of rights – pleasing re existence, awareness– But turning principles into practice?

Implementation of CP?

• Highly dependent upon the opinions and beliefs of those involved

• Western biomedical mode of treatment:• views ‘patient’ as pathological and needy

• In mental health field reveals - psychiatrists and patients characterise patient as passive and lacking ability

• Invalidation of personal agency in drug treatment sector – Position those seeking treatment as deficient, defective or ‘lacking’

• -> explore views of consumers and providers

Provider and consumer opinions

020406080

100

providersconsumers

Agree or strongly agree

Provider and consumer opinions

020406080

100

providersconsumers

Agree or strongly agree

Willingness for future activities

*CR involved in staff recruitment

*CR involved in staff performance appraisal

CR on decision making committees

*Consumers involved in staff training

Consumers involved in resource development

Consumer council/forums

SurveySuggestion box

0

20

40

60

80

100

ProvidersConsumers

Definitely or probably willing

Willingness for future activities

*CR involved in staff recruitment

*CR involved in staff performance appraisal

CR on decision making committees

*Consumers involved in staff training

Consumers involved in resource development

Consumer council/forums

SurveySuggestion box

0

20

40

60

80

100

ProvidersConsumers

Definitely or probably willing

Reasons for unwillingness – providers

• High – CR on decision making committees (n=15)– Staff reluctant – 33%– Not practical for this type of service – 28%– Clients lack necessary skills – 20%

• Mid – consumers involved in staff training (n=17)– Not practical for this type of service – 29%– Clients lack necessary skills – 18%– Staff too busy to facilitate client engagement – 18%– Training determined externally, therefore CP difficult – 18%– Viewed as not valuable or inappropriate – 12%– Clients not interested – 12%– Staff reluctant to have clients involved – 12%

Reasons for unwillingness – clients

• High – CR on decision making committees (n=51)– Not my place – 20%– Feel I do not have necessary skills – 20%– Believe that nothing would happen anyway – 18%– Too busy – 18%– Do not feel confident – 18%– Worried about being blamed for wrong decisions of other clients – 16%

• Mid – consumers involved in staff training (n=52)– Just want treatment – 31%– Not relevant to this type of service – 29%– Not my place – 25%– Feel I do not have necessary skills – 25%

Implications

• Considerable support for CP - Almost all providers and consumers believed in principle of CP; large % would be willing

• Providers concerns could be informed by positioning of passive patient in Western health systems– And drug users as lacking and in need of “fixing”

• Mental health literature re high level CP:– providers develop more positive views about consumers and become

more favourable to including them

• Consumers concerned about their role– Colluding with providers/service - tensions– Desire to focus on treatment

AIVL supported demo projects

• EOI to recruit 5 services with $9000 support– High level CP– Focus on sustainability– Consumer participants to be paid for their participation– No adverse implications for consumer participants– Plan – clear objectives, timeframe etc

– Ongoing liaison with AIVL– Support from local drug use org

• 3 opiate substitution• 1 outpatient detoxification • 1 residential rehabilitation programs

Evaluation of demo projects

• Focus on organisational context– bureaucratic processes, staffing, and other resources, plus mechanisms

enabling clear and timely feedback to consumers

• UK evidence – CP “user involvement”– agendas of treatment services and user groups to “collide rather than

complement”

• Virtually no evidence of policy frameworks to support CP in drug treatment

• Were services “fit for purpose” for CP? – Key staff/consumers– General staff/consumers– Baseline, 6 months post implementation

Stability and core business

Baseline• Stability

– discussions focused on consumers’ suitability– varied according to HR/abstinence focus of service

• Training– Focused on potential support needs of key consumer– Not much discussion on staff training, perhaps attitudes

• Risks Staff – threat to their role as staff members

Maybe a bit more open just to try, see how it goes (M staff).

if they [staff] don’t think CP is a good idea because may . . . maybe it’s a power thing. Some staff feel there should be more power than clients (Female staff)

quite intimidating to think that members of that client group are going to have access to us at a level where they’re not on the other side of a counter (M staff).

Stability and core business

Post-implementation• Stability - was the service stable enough?

– Considerable delays and disruptions

• “Non-core” business - not well planned or resourced; Other non-core activities at the same time

• Training– Provided by local DUO: consumers’ higher understanding (not staff)

• Risks– Delays to remuneration of CR– Unfair, “playing with people’s emotions”– Impact on self-worth trust of CRs

And I have to be perfectly honest here, it’s not gone smoothly . . . We’ve had a succession of people being the prime mover and as people leave, [are] seconded, lose

interest, that sort of thing . . . We’ve had many, many hands being, being the prime person (Male staff).

Implications

• None of 5 projects reached goals in timeframe

• Staff underestimated time and commitment (did not see need for training at baseline)

• Perceptions of consumers’ stability: relationship between attitudes and CP is circular, UK research:– failings of user groups were perceived to reinforce stereotype that

people who use drugs were unable to perform effectively– Organisational issues not considered

• Puts CRs in vulnerable position if choose to protest – Clients perceive access to treatment is fragile; punitive responses to

client distress or dissatisfaction

Recommendations

1. Training and capacity building for management and staff;

2. Adequate resourcing for consumer participation activities;

3. Commitment at all levels of the service to involving and valuing consumers;

4. Engagement with local drug user organizations.

CP is complex social intervention in which many factors may influence the outcome

– Power imbalances, reliance on stereotypes– Burden of CP too much for those with the least power to control their

own treatment.

NUAA Change project

• 3 drug treatment services supported to run CP– 2 public OST– 1 NGO resi rehab

• Activities– ‘Welcome diary’ for new residents, a service-users’ newsletter, a policy

review committee, tea and information stalls– Activities determined by service users in collaboration with NUAA

worker, and evolved according to local need/priorities– NUAA coordinated a three-day workshop: service users and staff

attending one day each; one day together

• Evaluation– Key staff/consumers; general staff/consumers – baseline, post

Baseline

• Consumer disenfranchisement– reflection of drug users’ broader social marginality and exclusion

• Enthusiasm for CP; opportunity to speak – having “humanness” recognised

So I think that they’re confused . . . they don’t really know what CP really means. And I also think that the ones that do know what it means are,

don’t really trust that there’ll be much of an outcome from it because they are so disenfranchised and not really able to, well have never really had

much of a say in their treatment. (Ashley, general staff)

I think that the more the staff hears of our problems, like the little everyday problems of coming here, I think the more . . .they can see that you know,

you are a human. (Jason, general consumer)

Changes

• Changing communication; Challenging “us” vs “them”; Working together

– Staff have been pretty positive. And they’re pretty open . . . It’s like everybody’s working towards one thing . . . It’s good to know instead of, you know, seeing the staff as staff, you know, that they are people . . . (Robyn, key consumer)

To know the real stories about them. Yeah, the true worries instead of just asking the routine questions and answering our questions. Yeah, that’s, that’s different than the normal way of communicating between

us. (Gerri, general staff)

Staff have been pretty positive. And they’re pretty open . . . It’s like everybody’s working towards one thing . . . It’s good to know instead of, you know, seeing the staff as staff, you know, that they are people . . .

(Robyn, key consumer)

Changes

• Levelling the playing field; re-orienting power relations

– [T]here used to tend to be us against them, us against them. Now we’re umer)

There used to tend to be us against them, us against them. Now we’re on the same playing field and we’re all a team . . . (Craig,key consumer)

It was quite nice to sort of sit in the room, you know, as equals and have discussions . . . I was most surprised about how much of an interest they

were taking. (Elle, key staff)

I think it has just created a level-playing field, that’s what it’s done . . . [I]t successfully gives people a little bit of power, pride even – that being able to speak, to not be running against brick walls all the time: that

someone listens to you openly and freely.(Susan, key consumer)

Implications

• Positive comments on staff-service user interactions/relationships– CP disrupts routine objectification which characterise drug treatment

• CP – created a conversation, a door way:– Generated alternative forms of interaction and engagement, creating

new subject positions for both service-user and staff participants – More “real” and “authentic” communication– Seeing each other “as people too”, rather than simply an identity

category

• Design doesn’t lead to definitive statements, but logic holds– Positive impact on therapeutic alliance

o Vital role of relations in effective operation of services

Concluding thoughts

• CP is complex intervention– Organisationally– Socially

• Staff/services may be under-prepared, not be aware of challenges that they need to address in own system

• Service users/CRs can be put into situations that increase their risk and vulnerabilities

• Impact on service can be driven through communication and relationships• Training, planning and support is essential

Good luck!

AcknowledgementsBased on research done in partnership with AIVL and NUAA

Australian Injecting and Illicit Drug Users League (AIVL). (2008). Treatment Service Users Project: Final Report. Canberra: AIVL.

Australian Injecting & Illicit Drug Users League. (2011). Treatment Service Users Project: Phase Two Final Report. Canberra: Australian Injecting & Illicit Drug Users League.

Bryant, J., Saxton, M., Madden, A., Bath, N., & Robinson, S. (2008). Consumers’ and providers’ perspectives about consumer participation in drug treatment services: is there support to do more? What are the obstacles? Drug and Alcohol Review, 27, 138-144.

Bryant, J., Saxton, M., Madden, A., Bath, N., & Robinson, S. (2008). Consumer participation in the planning and delivery treatment services: the current arrangements. Drug and Alcohol Review, 27, 130-137.

Rance, J., & Treloar, C. (2015). "We are people too": Consumer participation and the potential transformation of therapeutic relations within drug treatment. Int J Drug Policy, 26(1), 30-36.

Treloar, C., Rance, J., Madden, A., & Liebelt, L. (2011). Evaluation of consumer participation demonstration projects in five Australian drug user treatment facilities: The impact of individual versus organizational stability in determining project progress. Substance Use & Misuse, 46(8), 969-79.